I Love My Library…

One of the things I’ve discovered in the past 5 or so years is that libraries are adapting and offering more downloadable formats for books, magazines and movies. There are  library apps you can use on a mobile phone or tablet so that you can browse or search and then check out materials without ever setting foot in the library itself – not that the library is a bad place to be. I’m just saying it’s a convenient and wonderful thing to be able to check out an ebook or audiobook without having to actually go to the library to do that.

What frustrates me a little is that there are limited options for libraries we can use. I feel like the existing model that’s tied to the neighborhoods where we live is really outdated, and there should be more sharing of library resources between libraries, if not nationally, at least at the state level. I’m pretty lucky here in Seattle to have access to 3 major public library systems. That isn’t true in or near all big cities. In small towns, you’re really limited to only one – the county system. I think that for people who have one or no options, that really sucks. Everyone should have access to library materials no matter where they live.

Here in Seattle, we have the Seattle Public Library the Tacoma Public Library and the King County Library System. This isn’t much different than back home in Minnesota, although I am a little surprised that I can get a card at the Seattle or the Tacoma libraries. Tacoma more so because it’s in a different county; however, I can get a card because I have a card for the King County Library System. Back home, I wouldn’t have been able to get a card at the St. Paul Public Library because Stillwater was too far out of the city limits and also in another county. I guess I wasn’t paying much attention back in Houston so I don’t know how far I could go before I ran out of library options.

On a side note, the Tacoma Public Library allows me, as a non-resident of Tacoma, to get an e-card only that I can use to check out ebooks, and they don’t require me to show up at one of their branches with an ID to get a card beforehand. Seattle’s a different story. Guess it’s “lucky” that I get my chemo downtown and can stop in after a chemo appointment to pick up my card so I can start checking out ebooks from them.

Back to my original thought – what if you’re on vacation in a different part of the state and you just want to sit down with a good book at the beach and you didn’t think to get one before you left, or the one you brought sucks? Happily, with downloadable formats, you don’t have to be at home to access materials from your local library. But what if your local library doesn’t have what you’re looking for and the one at the beach does? I know, not likely, but then what? Then you’re either buying it yourself maybe from a local bookstore or having it overnight shipped from Amazon, or you’re requesting that your local library make that purchase and hoping that they do and then waiting for that to happen (not likely before you’re leaving for a week at the beach), or you’re basically screwed. How’s that fair or right?

If you’re interested in changing the rules on this, please write to your State Senator and State Representative for your district. Here in WA, I’m in District 11. If you don’t know who your state reps are, Google something like “state of xyz legislative districts.” The search results should give you links to your state legislative district maps, and from there, inputting your address will point you to the correct district and your elected reps.

If you love your library as is, drop them a line and let them know. There’s usually a place on the website to contact the library and let them know how they’re doing. They appreciate hearing that you’re happy with their service. Or, if you’re feeling nostalgic, take a thank you card to your local branch with a bag of chocolate candy.

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Life on Taxol

I’ve been on Taxol for 3 weeks now. I get the biologics Herceptin and Perjeta every 3rd or 4th week as well. They give Taxol weekly to help reduce the side effects. Luckily, I haven’t had any nausea issues with Taxol. This chemo does seem to cause a lot of sensitivity reactions in people. The first couple of infusions, I was taking the steroids beforehand, and wasn’t having any issues. Last week, I had a hypersensitivity reaction to it while I was getting it, so I guess I’ll be going back on the steroids this week.

Day 1 after Taxol with the biologics, I had bone/joint/muscle pain along with neuropathy, which is tingling/burning in my legs, arms, hands and feet. Neither Tylenol nor Advil were doing anything at all for the pain. After a couple of days, it occurred to me to try Magnesium supplements for the leg pains. I took a couple with the rest of my supplements and meds. The next morning when I woke up, I realized I had no more pains and no more burning sensations in my feet. Sweet!! That night, the pains started coming back not long after dinner. I added another Magnesium tablet that night and voila, pain managed for 24 hours!

The really awful salty taste I’ve had since starting AC is pretty much gone. The Taxol still has a “flavor” but it’s not nearly as bad as before. It doesn’t go well with L-Glutamine or vice versa, as I said in a previous post. I am able to drink water again. It’s nice not having to go crazy to add flavors to it to make it drinkable. My tea tastes a little better. I’m still not drinking a lot of it because caffeine because my doctor’s told me to keep it to a minimum. Because I’ve had to switch from Miralax to Immodium, I’m still drinking some Gatorade to make sure I keep my electrolytes up. I’m still not interested in any sugar-laden sodas, anymore, which is good. It feels good not craving sugar like I used to.

The hair loss story’s been interesting. I didn’t expect that I’d grow my hair back on Taxol. It’s kind of trying to anyway. But only kind of. What I didn’t really expect was to lose my eyebrows and eyelashes. I starting to kind of look like a well-loved teddy bear with all my patches of bare and growing fuzz.  The other fun is that the hairs inside my nose are now all gone. This means my nose just runs all day now. And… I have these really painful sores just inside my nose. I had them with AC, too. Now they’re worse because there’s no hair there to hold the mucus that would heal them. Aquaphor seems to help them more than Neosporin did, so I’ll be doing that from here out.

My energy level in general is a little better than before. AC chemo would slow me down a lot in the 5 days or so right after my infusion and then I’d feel almost normal on days 6-9. Those were the days I got the most done around the house. With Taxol it’s kind of in the middle. I still need, and am taking, a nap during the day when I feel like I need one, so that’s not changed.

I think the biggest and most noticeable is how dry my skin is since starting Taxol. I know some of this is related to how much fluid I’m able to drink in a day so I’m working harder at drinking more. Some of it’s also that it’s winter and the furnace is running. Cera Ve works best of all the hand creams I’ve tried so far, and I put the original Nivea cream on them at night. Even with that, my hands feel like sandpaper sometimes. I have some nice salt scrub with oil that a friend gave me when I started this journey that helps for my legs and arms.

Overall, I feel better on Taxol with the biologics than I did on AC chemo. I’m able to work again and can keep up my schedule. I still need a nap here and there, but that’s what lunch hours are for, right? Everything else is also manageable and I’m not feeling nauseated, so it’s all good. Nine more weeks of this and then onto the next chapter of this story.

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L-Glutamine to Counteract Taxol

I started on Taxol with the biologics Herceptin and Perjeta 3 weeks ago. I get the biologics every 3rd or 4th treatment, and I get the Taxol every week. The thought behind doing it every week is to minimize the side effects.

Day 1 after Taxol with the biologics, I had bone/joint/muscle pain along with neuropathy, which is tingling/burning in my legs, arms, hands and feet. I had some of the other side effects that I won’t get into. Swell! The oncologist had suggested that I start taking prenatal vitamins (I need the B vitamins and folic acid) along with 20 g of L-Glutamine every day. I was able to get the prenatal vitamins and start taking them right away after my last AC chemo. I was too sick with that stupid virus to go get the L-Glutamine until I started the Taxol.

L-Glutamine is an amino acid that you buy at a nutrition store, either in powder or pill form. Some people use it to preserve muscle tissue after a workout. It’s better known for countering the side effects of chemotherapy. For the amount I need to be consuming, pills weren’t going to work. Damn.

I got the L-Glutamine powder, which is supposed to be unflavored. Yeah, nice try. I first put it in my lemon flavored water. OMG, it was awful. Next thought was some sort of smoothie. For some reason, a lot of fruits just don’t appeal to me in the dead of winter. I suspect it’s the amount of sunlight that we get in winter along with vitamin C that determines this for me. Back in MN, I craved oranges and tangerines in January. When I moved to Houston, that craving in winter went away. When I moved up to the Tri Cities of WA back in 2009, we had more than 30 days in a row where we didn’t see the sun. I craved oranges like crazy. Hmm. Here in Seattle, it’s still sort of gloomy in the winter, but I’m not craving oranges like I normally would. Then again, I’m also taking a lot of vitamin C to help counteract the chemo, so… Then it dawned on me to put it in bubble tea.

I have a kind of favorite Vietnamese restaurant next to one of the grocery stores I frequent. I stopped in the store on the way home from chemo that 2nd week, and I also went in to the restaurant, ordered my favorite vermicelli salad and 3 bubble teas to take home. I got Mango, Blueberry and Almond – all strong flavors – and my go-to flavors as well. All 3 worked great with the L-Glutamine. The almond flavor, when I was done, turned out to be really sweet. Like almost sickeningly sweet. After researching the flavor powders and recipes, I also realized that putting the flavor powder in with almond milk was just adding sugar to the drink. Then I realized that I didn’t need the flavor and I could just drink it in almond milk. That takes care of two problems – getting the L-Glutamine in and staying away from sugar. Easy squeezy and done.

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Taxol – Take 3

I got my 3rd infusion of Taxol yesterday, February 16th. The first two went without a reaction so they told me I could stop taking the steroids. This was the first infusion without taking the steroids beforehand.

This appointment was pretty much a cluster. They didn’t have an 8:00 am appointment. I got 1:00 pm instead. I got there and they sent me to what they call Short Stay. That’s where they have people who will be there for 30 minutes or less. The idea was to access my port and do the blood draws there, and then send me on for my treatment. I sat in Short Stay for almost an hour until one of the other nurses came back from lunch. She took care of the port and blood draws and sent me back to the waiting room.

Once in the waiting room, another nurse called me almost immediately to take me to see the doctor. When we get to the exam room she asks me where I was because they’d been calling me for 20 minutes. I was kind of shocked that she didn’t know they’d sent me to Short Stay. I didn’t think much of that until later. I spent another 45 minutes in that room between taking my vitals, waiting for the doctor and going through my treatment history with him.To top off my appointment, he pretty much dismissed me as a middle-aged woman with age-related memory issues.

I finally got to a treatment room where I sat for another 30 minutes waiting for a nurse to come in and get started about 3:00. Another hour and change later, she figured out that the nurse who did my blood draw forgot a vial and they needed to take more, which she did. They finally ordered my chemo at 5:00 pm. I finally got to go home at 7:00 pm.  I don’t think I’ve seen a more inefficient and communication-less process. This seems to go on past the shortage of onco-trained nurses.

In the midst of all this, I didn’t see or hear from my oncologist’s’ nurse. She usually stops by during my appointments. I didn’t see a scheduler, either, so I have to call on Monday to schedule my next month’s worth of appointments.

I’m not sure if it was the chemo, the mixup in my pre-chemo meds, my general frustration with how I’ve been treated this past month or a combination of all of the above, but this infusion really bugged my stomach. I spent the entire night fighting reflux. Thankfully today was a better day.

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Happy Unbirthday

This year, it feels like I’m living life through the looking glass. Like I’ve tumbled down a rabbit hole and the only way out is through to the bottom. So, I’d already decided several weeks ago that this year would be an “Unbirthday.” One that is low-key and there isn’t much celebrating or other goings on.

When we were kids, my grandfather used to tease and ask my sister and I if we would give up our birthdays each year so we could have “double-bubble” next year. As kids we always said no. I suppose that we never trusted that he’d remember that we’d made the trade, and it would be truly doubly better the next year. Cancer sucks and changes all the rules of the game, so I’m saying screw it. Cancer’s already taken any guarantees I thought I had in this life, so I’m going for double-bubble next year.

New Year’s Eve this year was just another day. This isn’t the year anyway that will mark my annual trip around the sun. This year is the year that will end for me at Thanksgiving. That will be the holiday where I can hopefully stop checking boxes to get to the next treatment milestone. It will be the time that I can start counting the days until my food tastes normal again. It’ll be the beginning of flu season again, but maybe by my this time next year, I’ll be able to travel again without worrying quite as much about picking up any and every germ around and agonizing about whether my immune system will be able to fight it off.

What about double-bubble? What does that mean? Well, double-bubble will mean that I will treat myself to a night out, or a night in, depending on what I feel like doing next year, and I’ll do it with gusto. It’ll mean being able to do many of the things I’ve not been able to do this year because cancer robs you of so many things in life that are meant to be enjoyed. Like movies, weekends away, happy hours, dinners out and maybe a bottle of wine among friends. Maybe double-bubble will mean finding ways to celebrate all month long instead of just a day or a weekend. Whatever form it takes, it won’t include cancer or chemotherapy. It will mean I’m free to live my life to its fullest and make sure that the only checkboxes I’m marking are the ones on my bucket list.

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The Billionaires are Winning and Patients are Losing

The business of medicine and health insurance is dark and dirty. That’s what it is. A multi-billion dollar business. And all of it is set up to benefit, not the patients, but the people who run the business. All aspects of it are run by MDs, people who went tens or hundreds of thousands of dollars into debt to graduate from medical school. Not to be doctors, and help people, but to manage doctor’s offices, hospitals, research centers and insurance companies to ensure that every last penny is collected from people who go to them needing help with their health. It’s beyond ugly.

While I’m about to tell you more than you probably need to know about how this works, please don’t worry. I have this taken care of. It just makes me really angry that they are getting away with this and there is no recourse for people who can’t afford their medical bills but to take out loans, borrow from 401ks, or end up not paying and going into bankruptcy.

Just 3 months into my cancer diagnosis and treatment, I have bills for about $2000 in labs and other uncovered expenses across 2 separate bills. For 2 of these 3 months, the hospital, due to errors on their own part, had my billing address wrong in their records so I didn’t receive any bills. First problem: they refuse to accept any responsibility for this error. A week later, I received a  robocall after hours telling me that my bill was so far past due they would send it to collections if I didn’t pay the balance immediately. I then received a notice from a collections agency dated February 1st that my account is in collections. This means they didn’t wait for me to respond to their single robocall to send my account to collections. When talking with the billing department, the only options they’re willing to give patients with a balance is to break the balance into 3 payments, or offer an application to a service like Charity Care or Clear Pay where you would have to qualify to receive help with your bills. Hint: I won’t qualify for either. It seems so odd that they refuse to work with patients on a payment plan that fits a person’s budget better. They just simply expect that you have thousands of dollars at your disposal to hand them when the bill come, and most of us just don’t have that kind of cash lying around.

This, folks, is how people without decent health insurance or enough savings for an emergency end up in bankruptcy. No other industry works like this, and because this one is so awful, people are willing to go without medical treatment that could save their lives because these practitioners are not willing to actually work with people to get the bills paid. This isn’t right and it needs to be fixed.

What’s more insulting are the MDs running private practices that are now invoking contracts with patients that if they miss a single payment for service, their account will be sent to collections, and the patient’s relationship with their doctor terminated. That’s right. They will drop you like a hot potato. Over $25 (or maybe less). How these people all sleep at night is beyond me.

Update 2/9/18: There is another group of people to talk to at Virginia Mason, and there is a way to get on a payment plan that isn’t so limited as the hospital initially offered. This plan is offered through a 3rd party, payments start at 4% of the balance or $50, the first year is interest free and they do not send your information to a credit reporting agency. I am not positive how it would work with a ginormous bill, but for a smaller amount, it should be workable, at least for many people.

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First Taxol Chemo

Thanks to my wonderful coworker today for hanging out with me all day for my infusion and making sure I got there and back!! It was nice to have someone there with me to talk to and make the time go by!

Today, February 2nd, was my first Taxol chemo infusion, which I’ll be getting weekly instead of the biweekly treatments I was getting before. Also this time, along with the Taxol, every 3 weeks I will also get Herceptin and Perjeta, which are two biologics that target my cancer directly.

The Herceptin is used to treat the cancer that had already spread to my lymph nodes. The Perjeta goes after the initial breast tumor. Taxol is another chemo drug that is most effective on rapidly dividing cells, of which cancer cells are one.

Getting a chemo cocktail for the first time, the IV drip is set up to go very slow in case there is some sort of allergic or other hypersensitivity reactions, so today’s infusion took almost 4 hours longer than I expected. That said, next time I will only get the Taxol, and it will be given at the “normal” rate so it should be a shorter session than I had with the AC chemo. That will make some of my obligations at work easier to meet.

Today’s infusion was uneventful. I had no allergic or hypersensitivity reactions, which is awesome! The next couple of infusions could trigger some of those, so I’ll be watched pretty carefully for the next couple of weeks. The best outcome from this treatment is that at the end of 12 weeks, the scans will confirm significant shrinkage of the tumor, optimally that it is essentially gone and all that’s left are the markers they placed during my biopsy.

I’m hoping to escape or minimize some of the common side effects of Taxol like nausea, muscle and joint pain, and neuropathy. If I’m lucky, my oncologist will find something we can try to help mitigate the chemo brain effects in the next few weeks as well.

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